Old 04-16-2019, 05:16 AM #1 (permalink)
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Default Wholeheartedly Believe It's Bulbar Onset

Hi All,
I sincerely apologise for coming on here again. (Last here in 2012).
I just wanted to put my thoughts down into words due to the worry it is causing.
Firstly I’m a 34 year old male who is very overweight and leads a very sedentary lifestyle
I have had a large variety of symptoms which can be attributed to ALS (although as with many things can also be attributed to other things as well).
My most worrying symptom at the moment seems to be onset of bulbar type symptoms.
• The most bothersome of these Is an inability to speak properly, when I speak I seem to be tripping up over words, struggling to find the correct words, even in everyday normal situations I am finding myself saying the wrong word or not finishing a word properly (some examples are this morning saying bye to my son I said ‘Sigh’ instead, and later on in the morning when speaking with someone on the phone when trying to say ‘Speak to you soon’ I just stopped at ‘speak to you’ and left off the final word. This seems to be more of a ‘mind going blank’ problem then a ‘can’t say the word’ problem.
• I mouth breath during sleep rather than through nose
• Sometimes drool during sleep or very very occasionally when talking
• My tounge sits pushing against my front teeth rather than against the top of my mouth.
• I also seem to have minor nasel regurgitation, at times when eating tiny bits of food seems to get stuck at the very back of my nose until I ‘snort’ these back into my throat. I seem to very occasionally choke on saliva (although the majority of the time I have a very dry mouth), my bottom lip/teeth seem numb. I have some perceived problems with swallowing where I feel I have to position food at an optimum place in order to swallow it and often feel as though I need to take a drink immediately after eating to wash away any remaining food that wasn’t swallowed correctly.
• Hypernasality (no history of cleft palate or anything else that could explain this symptom)
• When I stick my tounge out it seems that the point seems to sway ever so slightly to the left (which is the side most of my symptoms relate to).
• When saying ahhh my soft palate doesn’t seem to really rise and looks as though it is already as high up as it can possibley go.
• Bottom lip and teeth feel numb and paralysed
• Post Nasle drip
• Other things I have noticed is twitching although this is all over (eye, hand, calfs, face)
• Myclonick jerks
• Left foot occasionally seems to catch the sole of my foot on the floor when walking (as if my leg is too long)

I am completely convinced I have this horrible disease, I will be visiting my GP tomorrow for a referral to a neurologist but I just needed to get this out of my system, with a 5 year old whom I love more than life itself It really has been effecting me substantially.
Thank you again for anyone who has taken the time to read this.
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Old 04-16-2019, 05:25 AM #2 (permalink)
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Default Re: Wholeheartedly Believe It's Bulbar Onset

I'm not reading anything to suggest ALS, Yorkshire, but a great deal that suggests sleep-disordered breathing and/or a sleep movement disorder. Struggling for words, saliva issues, jerks, foot dragging, mouth breathing, overweight, sedentary...it's like central casting.

I'd ask your GP to consider a sleep study, which is way more likely to produce something treatable than chasing MND.

Best,
Laurie
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Old 04-16-2019, 05:41 AM #3 (permalink)
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Default Re: Wholeheartedly Believe It's Bulbar Onset

Hi Igelb,
Thank you for your reply. I am actually set up with an appointment for the sleep clinic so hopefully any results can go some way to offset my worries.
One of my main worries right now is the Hypernasality and minor nasel regurgitation which I cannot really find any other causes for then soft palate weakness (although granted Im no GP so there could be a lot of reasons I’ve not looked into).
I am utterly convinced of a soft palate insufficiency however I am logical and understand that so far only ‘I’ seem to pick up on my symptoms.
Thanks again for your reply, I do hope this is the last you hear from me (unless I can hopefully post to show others that these symptoms are for something else and hopefully reduce someone elses anxiety).
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Old 04-16-2019, 01:43 PM #4 (permalink)
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Default Re: Wholeheartedly Believe It's Bulbar Onset

I would not be quick to rule out MND. Just see a neurologist and get an opinion.
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Old 04-16-2019, 04:24 PM #5 (permalink)
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Default Re: Wholeheartedly Believe It's Bulbar Onset

Dazzy,

You have been worrying about ALS for 7 years. You have had normal clinical exams and no progressive weakness or inability to do anything, If you had bulbar, you would have known significant weakness by now. Again, 7 years, no progressive weakness and clean clinical exams. Those who have been diagnosed with an MND do not have this type of history.

Best of luck to you.
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Old Yesterday, 12:03 PM #6 (permalink)
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Default Re: Wholeheartedly Believe It's Bulbar Onset

Hi Best friend,

It hasn't been 7 years of symptoms (at least not in my head) although the symptoms I described in 2012 are similar in nature there seem to be a lot more additional symptoms this time around and to a stronger degree. However I digress.

I have been back to my GP who doesn't feel that anything is wrong but at my request has referred me to a neurologist (only 22 days to wait).

I feel a bit more relieved today but only because I came to realise my symptoms and duration off symptoms, plus the on/off nature of the symptoms seem to point more towards MS (prob the only person in the world that is hoping Ms ��)

I though I'd give a quick update on the referral but otherwise will be trying to stay away from this forum as it both isn't fair for the people who actually suffer with this disease and for my own mental health.

Hopefully my only return will be to provide an update after the Neuro Appointment.

Thanks again for the replies.

Darren
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